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 irritable... and hard to understand 
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Joined: Mon Apr 14, 2008 9:50 pm
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Post irritable... and hard to understand
My Dad (63) was diagnosed about a year ago. He's still functioning independently, but we've seen some significant decline in the past year. Two questions:

1. My mom reports he is getting harder and harder to live with - he bites her head off when she asks a simple question - I've seen this a couple of times, but it is apparently worse when they are around. She is not sure how to react to this because she doesn't want to make things worse, but it isn't helping their relationship, that's for sure. The Doctor says it'll get worse. Any ideas?

2. My Dad's speech is getting harder to understand - noticeably so - he doesn't seem to be enunciating very well. Is this common?


Mon Apr 14, 2008 10:56 pm
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Location: SF Bay Area (Northern CA)
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Todd -

1. Yes, I think it's safe to say it will get worse. After it gets worse, it may improve/change too. How might it change? He may lose the ability to speak entirely!

Suggestions: Encourage your mother to join an LBD or AD support group. Encourage her to get counseling to deal with the crappy side of caregiving for someone with LBD. Encourage her to take a class on dealing with dementia-related behavior.

2. Dysarthria (slurred speech) is common in LBD. This will also get worse. Your father may end up not being able to speak. Consider now training him on non-verbal communication so if/when the time comes he already has some means to communicate with you.

Good luck,
Robin


Tue Apr 15, 2008 12:17 am
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Your Dad will probably get worse, often times they become so limited with activities and I believe this could be a reason for the constant picking. So my suggestion is to try and keep him somewhat motivated with other things, depending on his ability. Once your Mother comes to terms with the DX of LBD and realizes this is all part of the illness she will probably not feel so attacked with the words. Most people that have LBD have had it for sometime but it seems once a DX is made many things become more noticeable. There is a Spouse caregiver support group online if your Mother uses a computer and they are a very supportive group of people
Good Luck!


Tue Apr 15, 2008 1:27 pm

Joined: Mon Apr 14, 2008 9:50 pm
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Thanks, all. I've been sharing your insights with my mom and I think she's going to make the leap and get into a support group of some sort in the near future.
-Todd


Tue Apr 15, 2008 10:45 pm
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Todd,
If your mom is able to use a PC, have her join the LBDA Forum (here).
Robin


Wed Apr 16, 2008 1:26 am
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Location: Ozark, Alabama
Post 
Todd,
Your dad's health will continue to decline as time goes on and you and your mom are in for a long and difficult journey. Keep in mind the Dr's can only treat the symptoms and that is always very tricky. What works well with one may not work at all for someone else. My dad has had several med changes over the last three years and each one has been difficult for him and those of us that provide care and support. Also, as bad as it gets sometimes, cherish the good times when you have them.
Robin and Irene are right. If your mom uses a computer get her hooked up to this web site. Even if she doesn't want to post a message it's full of experienced and caring people who can be a comfort to her. We also offer unsolicited advice sometimes, here's mine.
Read everything you can about LBD. You will find you may have to educate a lot of people.
If your mom is the main caregiver, you need to be her caregiver. She will need your comfort and support.
If you have siblings, get them involved as well.
Share your experiences with others, good or bad. They will help others dealing with LBD.
On that note, my dad was in rare form the other day. As he was walking to the bathroom he stopped at the doorway and raised his foot about 12 inches off the floor. My wife ask him what he was doing and he said "I'm sowing my wild oats". He then turned to her and smiled. That was a good time and we cherish it.
Joe

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Wed Apr 16, 2008 2:43 pm
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Post irritable
This seems to have worked for me. My husband who is in a dementia facility has regained the ability to communicate. With staff and all visitors he is polite and grateful; with me complaining, negative, critical and angry. One day I treated him as thought he were well and said, you know, I don't enjoy listening to this, so I'm leaving now, see you later. Then I skipped my next daily visit. The next time, he apologized and has not been hateful to me since. I know you can't leave if they're at home but you can leave the room! Of course it all depends on the patient's ability to understand. I pray for all of you patient's and caregiver's mercy.

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Would have despaired...


Wed Apr 16, 2008 8:00 pm
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Melinda,
Good for you! I wish such a straightforward approach would work for everyone. I'm glad it worked for you!
Robin


Thu Apr 17, 2008 1:39 am
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Post Re: irritable... and hard to understand
This is so classic for the relationship that mum has with dad. I spoke to mum last night on the phone and was consciously trying to have a conversation without talking about dad just life in general stuff. She was the one who asked if I had seen dad this week and I went on to tell her a couple of things and then she informed me she would again not be attending the xmas dinner the ALF is putting on as her kids xmas party is the following day and driving home at 8 at night after organising the party would be a nightmare. (home is 30mins away) I simply said well when you are telling the ALF you won't be there tell them there will be 4 of us going. She then went on to tell me that her visits were very nerve wracking as dad is mostly vexed over one thing or the other and accuses her of lying to him and other such accusations. I think perhaps that if mum had told dad the facts about his illness when he was diagnosed that he would not be so untrusting. This is one thing dad has always thanked me for BEING HONEST! No bullshit he wants to know and he CAN handle the truth. So again I am feeling deflated over the relationship. I was sympathetic to mum on the phone as she told me it had been going on for years and she can't handle the treatment he dishes out. I have had a couple of heart to hearts with dad this week and for what it is worth I hope he remembers our conversations next time mum visits and takes a deep breath and puts his brain into gear before he says the first thing that comes to his mind. Like I said for what it is worth. The thing is one of the first things he says when I visit is "How's mum" then he breaks down. And is so remorseful over how he has spoken to mum but it is like he can't stop himself.

I am just toying with the idea of suggesting to mum to seek a group or go talk with someone over the xmas break. As dad isn't going anywhere for a while yet I think and someone said to me the other day "God will let our heart break over and over until it stays open to pour out love and receive it" I am praying for mum to have an open heart. I admit I am not an overly religious person but I do believe in angels so I often pray to relatives and friends passed to help mum and dad to get through this.


Mon Nov 29, 2010 4:43 am
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Post Re: irritable... and hard to understand - Kelli
Kelli - Your post makes me want to put my arms around you and tell you it's OK. You can't repair the broken relationship between your parents. If they want a warm relationship (as your dad seems to want), the two of them will make it happen. If your mother's visits with your dad are painful for her, she may want to avoid more pain. It's doubtful that attending a 'group' will change her mind. (In fact, it may make the situation worse because she may react to the suggestion negatively. I think I would.)

I understand that you feel 'deflated.' Listen and sympathize with them but don't take sides. Try to avoid conversations with them that bring up 'old history' of previous conflict. Those don't need to be reinforced. Always attempt to talk about the good times they have had together. It will be those cherished memories that will bring them together again.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 29, 2010 8:24 am
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Post Re: irritable... and hard to understand
Kelli,

Just a bit of a differnt view for you to think about and this is not about who is right or wrong.

My husband when he was alive and in the yrs of LBD at one point was very combative and would say the most horrible things to me and I for a very long time couldn't believe these horrible things would come out of his mouth and when calmer he too would be remorseful and this only happened during the yrs of LBD and no one but no one seen it but me, my children would come and he would be great and polite just like he was most of his life, it seemed he took it all out on me mostly in private, there came a time towards the end he no longer could do his showtime and the children finally got a look at what I was enduring all along and they were very apologetic but I am sure prior to them seeing it they walked out of our home thinking I was nuts.

Perhaps your dad has always been like this with your mom and eventho now partly from the disease she just can't take it anymore and can't seem to grasp he is not in control of his actions now, it would be great if she could talk with someone who perhaps lives with this in their lives but as Leone mentioned she may react in a negative way it really needs to come from her that she wants help with it or not, they are both your parents and you love them both but you must remain neutral.

I know this is very hard for you and I understand, I had parents that weren't always nice to one another too!

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Irene Selak


Mon Nov 29, 2010 3:38 pm
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Post Re: irritable... and hard to understand
Similar situation with us, Irene. No one saw or heard the abuse but me except for once in a while in the background when I was on the phone. The main difference from Kelli's mom is that I didn't distance myself from him or the situation. How we respond is a very individual thing. Kelli, it sounds like your mother has a productive, caring life outside of the marriage and she chooses to live where the joy is at this point, rightly or wrongly. I wish all of you the very best--you are so caring and I know they both must love you dearly but you cannot be expected to mend their broken relationship. They will have to do that with God's help, themselves.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 29, 2010 3:57 pm
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Post Re: irritable... and hard to understand
Thanks Pat and Leone for the honest advice. I decided to give one of mums friends a call last night after posting and she confided in me that she once thought that mum was hard on dad when he was at home but having herself been and still is in an unhappy marriage sees mum having been in a similiar situation. She totally agrees that mum should seek counselling but as with myself is mighty hesitant to suggest as would only get the "Oh I'm alright" answer. She told me that mum visited her on the weekend and was a little distant and mum had told her she was not going back to visit dad until xmas day and she feels like mum would just like to forget that dad even existed. This shocked me of course but I need to get used to this relationship that they don't have. Sometimes I wish dad was treating us all the same good or bad at least there would be some cosistancy! But I know that that is not how things are in this journey (for now).
I am seriously thinking about seeing a nun whom my neighbour (who works in another ALF in our area) suggested to me as she is apparantly fantastic at counselling in these situations. As I think the stress of this situation is causing me to consider to engage in things that I would never have done and it is scaring me.


Mon Nov 29, 2010 4:54 pm
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Post Re: irritable... and hard to understand
Kelli - as others have said, trying to fix your parents' relationship is only going to happen when your mom wants that. If you concentrate on taking care of you, you'll be able to help your dad that much more. You can't fix it for them, and it sounds like you are very disappointed and frustsrated that you can't. But YOU can't. No one can but them, especially your mom. I know it's hard - my parents didn't get along that great either for years before my mom died. I did what I could, but I couldn't drag them to marriage counseling. If my mom were alive right now, she'd probably be telling my dad that the reason he's so ill is that he didn't eat a healthy diet or get any exercise, and I think she'd be really resentful of all the responsibilities she'd have to take over for him. We can't patch up years of eroded relationships, no matter how much we want to. I hope you have a peaceful night. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Nov 29, 2010 6:44 pm
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Post hard to understand
Dale doesn't really slur his speech but he often says something that doesn't make sense and is then offended when I don't take it seriously enough. The thoughts he expresses are mostly related to his very creative 'imaginary life' and I can't begin to understand what he is trying to say. It makes me seem to him like I don't care what he is thinking.

This is a huge struggle at this stage. It's as if we are living in two very separate worlds. If I ask him to repeat what he said, he acts as if I am the one who is at fault for failing to listen carefully enough. If I ignore it, he is hurt that I don't care. It's a no-win situation for both of us.

I suspect that I'm not alone - but it's one of the most annoying symptoms yet. :roll:

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 11:28 am
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